Samantha's story with Complex Regional Pain Syndrome

Updated: Jan 12

Hi! My name is Samantha Cohen and I am 15 years old. My overall goal is to help other kids with their own challenging experiences regarding chronic pain. I know how frustrated and defeated chronic pain can make one feel, so I want to help people based on my past experiences.

I have struggled with chronic pain, specifically CRPS (Complex Regional Pain Syndrome), for almost four years. It all started at the end of fifth grade when I twisted my knee while running the mile. My doctor said that it was Osgood-Schlatters, but it progressively got worse until I couldn’t handle the pain. I was diagnosed with an OCD knee lesion and was told not to put any weight on it for a few weeks. I was on crutches for approximately 6 months, as the pain was heading in the wrong direction and getting worse once again. I went to probably a dozen different doctors looking for a diagnosis that explained the increasing pain, but none of the doctors knew and kept sending me to others. I ended up going to a physical therapy facility where I had to do 4 hours of intensive physical therapy a day, but even that didn’t help. This was the most frustrating part - searching for someone who understood my pain.

After being on crutches for half a year, my other leg (my good leg) began to hurt and I could no longer put weight on that leg either. I was in a wheelchair for 6 more months. I finally came across a pain clinic that diagnosed me with CRPS, which explained everything. After many long months of going from doctor to doctor, struggling with my overwhelming pain, and a ton of hard work, I am finally able to walk again and have gotten back to dancing every day, which is my favorite thing to do.

My chronic pain journey was definitely the most difficult years of my life and I know what it’s like to feel misunderstood and alone. Although my family supported me through it all, I know that some coaches, teachers, and friends don’t understand. I think it is important to spread awareness of chronic pain and the fact that injuries aren’t always visible. I want to spread the message that just because someone doesn’t have a cast or brace doesn’t make their injury any less important, serious or real.

I am also a youth board member for CHYP, which has not only helped me, but has also helped many others. I have learned from this organization that the most helpful and comforting thing one can do for someone who experiences chronic pain is show understanding and comfort. Chronic pain isolates the person, but showing support, love, and encouragement can help them astoundingly.

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